OUR STORY
The Danielle DeMarzo Foundation, Inc. (“DDF”)
was founded in July of 2000 by Frank and Jeannie DeMarzo of Coral Springs, Florida, and their two daughters Jennifer and Danielle. Through the personal experience of raising a child with a chromosomal abnormality, and subsequent growth related disorder, they can identify and share in the experiences of other affected individuals and their families.
Frank and Jeannie DeMarzo were high school sweethearts. They married in 1975 (Frank was 20 and Jeannie was 19 years old) and shared the same hopes and dreams of many couples. Two years later they had their first daughter Jennifer and in 1979 Danielle was born.
Times were hard and they didn’t have a lot of financial resources. But regardless of their financial situation, like many new parents, they were excited about raising their two girls and wanted only the best for them.
Family was always important to the DeMarzos and they always made time for family vacation. At four years old, after returning from a winter vacation, Danielle came down with a serious case of bronchitis. Frank, Jeannie and the girls had recently relocated to Coral Springs and Danielle’s pediatrician was 28 miles away. They only had one vehicle at the time and it was not very dependable, so they decided to take Danielle to their nephew’s doctor in Coral Springs. They figured it was closer and it would be a good idea to let him meet the girls in the event of an emergency.
Dr. Day was a young physician fresh out of medical school. He knew the DeMarzos through their nephew and was able to fit them into his schedule. In addition to treating Danielle for her bronchitis, he noticed a few things about her that concerned him. She was not on the growth chart for a child her age and she displayed features similar to two girls he saw in his residency program. He said he had a premonition and asked if they minded doing some blood work. He didn’t want to alarm them so he waited for the test results. Four weeks later Danielle was diagnosed with Turners Syndrome.
Turners Syndrome is a chromosomal abnormality that affects one in two thousand girls. Of those two thousand, only two percent of those girls survive pregnancy. So it was a miracle, that Danielle was even born. In the cases where the baby survives, then this condition can also affect her growth, heart, lungs, kidneys, development and fertility. This news was devastating to Frank and Jeannie. Here was their daughter, perfect in their eyes, with this syndrome (i.e. chromosomal abnormality) they never heard of and knew nothing about.
Dr. Day gave them whatever information he could find and referred Danielle to a pediatric endocrinologist, a specialist for girls with Turners Syndrome. The office scheduled the appointment and Frank and Jeannie immediately took Danielle to the specialist. After checking in Danielle, she was sent for a series of tests, x-rays and sonograms. They waited in the play area and the doctor called them in to discuss his findings. He placed Danielle on the exam table and proceeded to discuss their daughter.
OUR GOALS
Maintain an Educational Scholarship Program for individuals with growth related disorders and special needs.
Provide resources for children with special needs to attend summer camp.
Support a Financial Assistance Program for individuals with medical conditions and needs who do not meet financial criteria for state programs and financial aid.
Support resources and activities for children with learning, mental, or physical disabilities and their families.
Assist affected individuals without healthcare coverage or those unable to meet insurance premiums or deductibles
for adequate healthcare.
Provide assistance to individuals with disabilities through our
Give A Lift Program.
Increase public awareness of health related issues that affect children.
The Danielle DeMarzo Foundation, Inc., is dedicated to supporting and providing resources and activities for children with special needs and individuals with growth related disorders through charitable contributions, donations and fundraising events.
The objective of this organization is to create parity amongst individuals with similar differences. The Danielle DeMarzo Foundation, Inc., will enable such individuals and their families to have access to a broad range of health, social, and educational resources through, seminars, programs and public awareness.
OUR PURPOSE
As quoted by the DeMarzo’s “We remember his words as it was yesterday. He said to us…”This is very cut and dry…your daughter has Turners Syndrome. She may have problems with her heart, lungs and kidneys. We will have to follow that. She is not going to grow properly and will be at best 4 foot 4 maybe 4-6. She will not be able to develop normally like most girls and will have learning disabilities. And she will most likely not be able to have children. There is not much we can do for her as I said this is pretty cut and dry”
In a split second their lives had changed as they both looked at each other in shock and Danielle sat and listened. Frank immediately excused Danielle to go to the play area just outside the examination room. After she left the room he looked at the doctor and said to him “There may not be something you can do for our daughter, but we will find someone who can!” They walked out of the examination room, picked up Danielle and left. As the tears welled up they got in their car and headed home.
Understand 31 years ago there was no internet. There was little information available and it was very outdated. They knew they had to do something, but didn’t know where to start first. They, like most, did the only thing they knew…they prayed.
A couple of weeks past and Jeannie remembered an article her mother sent her a month before Danielle was diagnosed. It was titled “New Shot In The Arm For Kids” It spoke about a new synthetic growth hormone that was being studied by a company named Genentech, Inc. It spoke about how there would be an abundance of growth hormone available to all types of growth disorders. Turners Syndrome was mentioned in that article.
The DeMarzos went back to the local newspaper and looked through all the weekend editions until they found the article. They called the contact number and were connected to the National Institute of Health. They told them there was a small group in Toronto Canada called the Turners Syndrome Society and gave them their contact information.
The DeMarzos called the society and were informed they were having their 2nd annual meeting coming up that Mother’s Day weekend and booked two tickets to Toronto in hopes of finding some help for Danielle. During that meeting Frank and Jeannie saw firsthand all aspects of Turners Syndrome. Overwhelmed with concern for Danielle they listened intently to the entire program.
Speaking that day was Dr. Margaret Macgillivray, a pediatric endocrinologist from Buffalo, New York. She went to school with Dr. Janet Silverstein from Shands Hospital in Gainesville, Florida and recommended they go see her. The DeMarzos called Shands and Danielle became a patient of Dr. Silverstein. Every three months, for Danielle’s entire childhood, she visited Shands for treatment.
Frank and Jeannie continued to go to Canada each year and bring back information for the families in Florida. Jeannie volunteered her time for years setting up support group meetings and activities for the children and their families. She was even privileged to work together with a group of individuals to help form and bring the Turner Syndrome Society to the United States.
She served on the board of directors of both the Human Growth Foundation and the Turners Syndrome Society for many years sharing their experience and assisting families in south Florida. In addition, Danielle was able to partake in a study for growth hormone and her data was later used to get growth hormone approved for the use in Turners Syndrome. Every day for nine years she took an injection of growth hormone.
Today Danielle stands tall at 5 feet. Under the care of Dr. Silverstein, she was able to get all the medical care and treatment to develop normally and did so well she was a Children’s Miracle Network Poster Child for Shands Hospital in 1995. Her learning disabilities were addressed and Danielle graduated in the top ten percent of an International Baccalaureate High School Program. She was accepted to the University of Miami on a Pre Med Academic Scholarship and graduated with a Bachelor’s Degree.
Today Danielle stands tall at 5 feet. Under Dr. Silverstein’s care, she developed normally. Danielle graduated in the top 10% of an International Baccalaureate High School Program. She was accepted to the University of Miami on a Pre Med Academic Scholarship, graduating, with a Bachelor’s Degree.
She studied medicine for two years in Cambridge, England and attended medical school at Ross University graduating with High Honors in June 2007. She successfully completed a residency program through the OB-GYN Department at University of Oklahoma Tulsa and is currently licensed to practice medicine in both Oklahoma and Florida. She then continued her training completing a Fellowship in Genetics at University of Miami Jackson Memorial Hospital. Dr. Danielle DeMarzo is currently on Faculty with the Genetics Department at University of Oklahoma Children’s Hospital as a Board Certified Geneticist.
Imagine, a child with less than a 2% chance of even being born is able to be the first touch to welcome a newborn baby and assist children and families affected by genetic disorders! Giving back with a thankful heart, Danielle is a true miracle success story.
In 2000, knowing Danielle would be okay, and after many years of meeting families of children with special needs, the DeMarzos decided to start a foundation and name it after Danielle. She is an inspiration to many children and individuals not just with Turners Syndrome but with any physical, emotional or educational challenge. The foundation is the family’s labor of love to give back to others what was given to them from people who came into their lives just when Danielle needed them most and help her to shine and bloom into the amazing person she has become.
The Danielle DeMarzo Foundation, Inc. (DDF) is a recognized 501c3 organization dedicated to providing resources and activities for children with growth related disorders and individuals with special needs. We are dedicated to supporting resources and activities for these children and affected individuals. Our goals are to create parity amongst individuals with similar differences by providing access to a broad range of health, social, and educational resources through recreation, seminars, programs and public awareness.
The Foundation is managed by a nine member board of directors. Each member has either professional expertise of personal experience in the field of growth related disorders, education, child advocacy, disabilities, legal, accounting and non-profit groups. DDF is a volunteer organization and there are no paid employees of the Foundation.
DDF is registered with the Florida Department of Agriculture and Consumer Services and the New York State Charities Bureau. Thus allowing the organization the opportunity to solicit funding from public, private and corporate arenas.
Since its inception, the Foundation has been well received amongst health care professionals, existing child advocacy groups, health organizations and the community at large. The educational and financial assistance programs are operating and the organization has hosted social and group activities for the families. Moreover the Foundation continues to successfully solicit donations and contributions to better serve the southern United States population and others participating in the Foundation’s programs.